It's been a while....

.....it sure has! Forgive me father for I have not updated my blog in well....a long time! I feel like I'm in the confessional. 

There were a number of reasons for continuing with this blog whilst being treated for breast cancer. It obviously wasn't the reason I started it; that was after the fallout of being wrongly diagnosed and treated for bone cancer all those years ago.  

I find writing cathartic and it helps keep a larger number of people informed as to treatment, progress and developments. Well, to be honest these last 4 months I haven't felt much like writing or doing much else. Literally putting one foot in front of the other (sometimes not even being able to do that) has been tough, keeping the house running and the three stooges getting to where they need  be has even been hard, really hard. I guess this is again #therealityofbreastcancer or living with any type of cancer diagnosis and subsequent treatment. 

I haven't done this without help, oh no, that unwavering support from the masses has literally at times carried me and our family. Everything you can possibly imagine; from meals being delivered, children being ferried around, hugs and kind words from dear friends in the playground, when on occasion I have crumbled and literally sobbed with physical and mental exhaustion. Friends and family accompanying me to some of the many appointments, sometimes literally dropping everything on the spot. Cards, gifts and flowers through our door to the lovely messages of support by text, email and Facebook from folk all over the world. Often when I just needed that extra encouragement to 'keep on keeping on'. A new catch phrase for me, along with my old adage 'nothing is straight forward'. Which incidentally has also continued to ring true!! 

People say you find out who your friends are at times like this and it's absolutely true. Some who I thought would have been in touch or to see me have not. Others, sometimes those who were previously acquaintances or people I've met through social media over the years have been amazing. They also say cancer brings out the best and worst in people; again that's true. The pressure and expectation people have of you is very hard to live up to at times. Or maybe it's the perceived expectation I think they have? Or even I have of them? The subject of another post I think!!!

In a nutshell these last 4 months have far from 'flown by'. Much of the time I have felt I've been wading through setting concrete! Not easy at the best of times never mind with a false leg that's not even fitting properly! 

I knew waking up from over 8 hours of major surgery was going to hurt but boy did it hurt! Even when in CCU (Critical Care Unit)  for the first 24hrs pumped full of drugs I knew it had been a 'biggie'.

I had a procedure called DIEP Flap reconstruction at the same time as mastectomy http://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/diep. My surgeon, Augustine Akali or The Boss as my BCB (Breast Cancer Buddy) Carolyn and I call him http://www.restoresurgery.com/downloads/Personal-Profile-Augustine-Akali.pdf, is an expert oncoplastic breast micro surgeon. If you live in Hull or North Yorkshire you can go to Castle Hill Hospital in Hull https://www.nhs.uk/Services/hospitals/Overview/DefaultView.aspx?id=RWA16 for this procedure on the NHS. It is not offered currently at Leeds, Bradford or Harrogate as they don't have the specialist microsurgeons to do it (sadly one Doctor trained by The Boss left St James' to head north just before my surgery was due). Thankfully I still pay for private cover with AXA PPP Healthcare and was able to use that insurance to go to Spire Hospital in Hull https://www.spirehealthcare.com/spire-hull-and-east-riding-hospital/?gclid=CjwKCAjwmqHPBRBQEiwAOvbR8zRKY8I7Llc06gDbenI_H8MWLhNjqZk6ziS-NNGwwFI7NbkI0m-P6RoCol8QAvD_BwE&gclsrc=aw.ds

The reason I was so keen to have this specific type of reconstruction was that they don't take any muscle from elsewhere to reconstruct the breast. With my other difficulties I need as much as I can get! Some women opt for the Back Flap where they bring some of the Latisimus Dorsi muscle under the arm and recreate the breast http://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/lat-dorsi As a long term user of crutches and a wheelchair and doing a lot of swimming this was not an option for me. At Leeds the Head Plastic Surgeon does a procedure called The TRAM Flap using some of the rectus abdominus (tummy) muscle to reconstruct http://www.breastreconstruction.org/TypesOfReconstruction/tram_flap.html I use my stomach muscles more than most, for example to help sit up when I'm not wearing a prosthesis. Again not a good surgical option for me personally. For once having some excess abdominal tissue went in my favour and the bonus of getting rid of that at the same time as creating my Noob (AKA New Boob). Win win I hear you say! I 'lost' my belly button as well and had to have a new one created as you can see.

The surgery experience and recovery really does warrant a post of it's own, so keep your eyes peeled!

Nor did I want an implant as I know these require replacement in the future and whilst still facing more breast surgery in 2018 I would REALLY like that to be it!

Unfortunately I ended up with a seroma a few days later around the stomach wound and had a petrifying experience when I had been discharged, was walking out of the hospital to the car and the wound literally burst open and was pumping out blood and fluid EVERYWHERE. Soaking through clothing and bedding, necessitating a very fast readmittance and wearing this lovely collection bag for a while :-/

Fortunately the relocated 'flap' from my abdomen 'took' very well, which basically means the reconnection of the blood supply was successful (for some this isn't the case sadly and if it fails in the first 24 hours they have to go back to theatre to have it removed) Unfortunately the skin and some underlying tissue on the bottom part of Noob went necrotic (died). Looking back at photographs (I won't subject you to these) it was evident straight away as the skin went purple. During the days that followed it became black and it was decided it needed removing. I was allowed home for a few days then readmitted. This next surgery involved debriding (cutting away) the dead skin and tissue and quite literally patching it up with skin grafted from the thigh on my remaining leg. The graft is one of the most agonising things I've ever had and quite extensive as you can see from the photographs.

It needed to be dressed at first, along with Noob every other day. You can see here, how even in 2 days they got soaked through and I had to patch them up to stop blood and fluid leaking onto my clothes.

Unbelievably I didn't qualify for anyone to come and do it at home as I wasn't 'housebound'. Despite the fact I was struggling with the fitting on my prosthesis and in agony with the other leg, been cut from hip to hip and had a mastectomy....

I felt like I was being held together purely by dressings!

I was unable to drive myself to St James' for these dressing changes at first as the appointment took about an hour and it was extremely painful to have the wounds redressed. It also made me feel quite sick. Thankfully for most part friends and family took me. My best friend since school, Lorna, who by her own admission is squeamish, was thankfully with me AND stayed in the room, on probably the worst occasion. It was agony as the dressings had stuck to the graft site and had to be soaked off. Not only that we sadly encountered the most horrible, cruel Nurse I've ever had the misfortune to be treated by. And yes I did later complain and never had to see her again. Which meant on the whole I had appointments with Lynne in the breast dressings clinic. I became very fond of her and she couldn't be have been kinder. 

I don't think it can be under estimated how important compassion, kindness, gentleness, a smile and most of all communication is when patients are in these vulnerable situations. Despite the cuts, time pressures and general strain on our amazing NHS these cost nothing and can make ALL the difference. Whereas little comments such as 'does it really hurt that much?' Or 'it can't be that painful' or no explanation of what's happening have a huge negative  psychological effect. I can honestly say I've met some very special medics, especially nurses, during this long course of treatment and I will never forget their kindness. 

Waiting for surgery or treatment to begin is hard, a kind of weird limboland but at least you tend to have dates and appointments so can plan and start to try and get your head around it but 'delayed healing' is tough, really tough. How long is a piece of string? No one can tell you when your wounds will be healed and you can begin the next round of treatment. As the chemotherapy I had caused immunosuppression healing can be even more difficult. Ten long weeks after my second surgery I was finally discharged from the dressings clinic. You won't be surprised to read by the end of it the receptionists would say 'Hello Victoria/Mrs Gilbert'. 

During this time Sean went and climbed Mount Kilimanjaro in Tanzania with his sister and a few others to raise money for The amazing Yorkshire Cancer Centre that has saved mine and many other lives. Their contribution being an impressive £3592. It was important he was still able to complete this long planned challenge but going only a week after my 2nd surgery meant I needed a lot of help to survive the ten days he was away and get the children from A to B to C. Thankfully my very own Girl Friday AKA Deirdre, literally flew in from The Emerald Isle. Together with others from #TeamVicki we were kept fed and watered and all shipped about. Hoping Sean would return refreshed in both body and mind was not to be as he came back suffering from Pneumonia, which at first we mistook as Altitude Sickness. So it was his turn to be admitted to hospital! It really did feel at that point that point the odds were stacked against us! Luckily once again #TeamGilbert rallied and helped us through. 

We were also facing numerous challenges, helping the children to cope in their various ways with my diagnosis, illness and treatment. They've all reacted differently and it's been very hard on all of us at times. Sadly their main point of reference where cancer was concerned was the long drawn out, painful death of one of their Grandmothers 4 years ago. 

Ironically the delayed healing meant I was unable to start Radiotherapy treatment until September but it meant I was able to spend most of the summer with the children and we even managed to escape for a couple of short breaks when the dressing changes became less frequent.

Radiotherapy comes next.....

Noob

A couple of weeks ago I think I wrote; I'll see you on the other side. Well I am here, on the other side. 

As foreseen I've been to hell and back in the last fortnight. The expected tough parts have been just that...tough. With some added extras that have made it even tougher. 

I'm not even going to bore you with all the details, gory or otherwise, save for saying yet again I came across some incompetent, thoughtless medics who in the end I asked not to be allowed near me again. 

On the other hand I was cared for by some lovely, compassionate nurses; male and female, who were just fantastic. Nothing was too much trouble and they went that extra mile to make me feel ok whenever they could, physically and mentally e.g. toast and jam midnight feast 😋 My consultant is a lovely, caring softly spoken guy, not to mention a highly skilled micro surgeon, who came to see me everyday no matter what time he finished surgery. Which was 11.30pm one night and yes....he still came. 

The surgery was long and tough to wake up from. I always suffer badly from a sore throat after surgery but such a long one meant the tube to intubate me was down for several hours. The only 'perk' of this is eating scrambled egg, soup and jelly for the next few days! 

After 3 days on oxygen, first a mask then tube up my nose, it was so irritated and bleeding that I only lasted another day. I then battled to gets SATS over 90 at every set of observations, constantly being threatened with going back on it. So it was lots of deep breaths, wiggling the monitor etc and Bingo!

The surgery was 'successful' in that during 7 1/2 hours I was in theatre they removed belly tissue and skin known as 'the flap' (hence being cut from hip to hip....ouch). Removed the diseased breast and reconstructed my new boob (or as it's affectionally now known as Noob ;-) a great deal smaller (as requested!) I might add than the right one. Which will be operated on to be 'matched' in 3-6 months. In the meantime I've been given a soft prosthesis so I don't look lop sided! 

The most serious concern after this type of surgery is for the flap to fail.  If this is going to happen it usually does in the first 48 hours but you're closely monitored for a good 5 days. As they also reconnect the blood supply from the abdomen in Noob this is what usually fails...caused by clotting. Whilst in Critical Care they monitor Noob's temperature with a permanently connected sensor as well as manually taking it and checking appearance, together with obs every half hour for the first 24 then hourly for the next 24. Cue light on at each check, tight BP cuff, thermometer shoved in ear = zero sleep. But it's great to know how closely they keep an eye on you. 

Unfortunately it became clear quite quickly that Noob's skin wasn't healing as well as we'd hoped. I had a large blood blister drained a couple of days later and as time went on the area became necrotic, sadly the skin had not survived and had died. There were 2 options moving forward. Leave the necrotic area until it heals and quite literally drops off. This can take several weeks to happen and unfortunately time is not on my side. Any further active treatment needs to happen soon. This will be either more chemo and radiotherapy or 'just' radiotherapy. This is dependent on the pathology results from the surgery. These should be in this week and I'm hoping to receive these and the treatment plan next Monday. 

So the other option is to operate; debride (cut away) the dead tissue and tidy things up using a skin graft from my thigh. This will hopefully mean much quicker healing and my ability to move on to the next stage of treatment. This is the only option then for me so they planned it for this coming Thursday, 29th of June. 

So after a week seeing nothing more than the corner of a window and a fan in my face morning, noon and night to combat the heatwave - that I missed - I walked with my prosthetic leg and crutches out of the hospital. It may have been at snail's pace but it was upright and walking!!! Knowing it was only 6 days respite until Mr Akali sees me again ready for the following day's surgery. 

So we're in yet another 'limbo land' waiting for Noob Surgery Round 2, but enabling my stomach to start healing. So I need to focus on that and resting; which isn't hard as it REALLY hurts to move and use crutches and a wheelchair. I'm trying to manage on slow release morphine in the morning and evening, also regular codeine, paracetemol and ibuprofen. I'm still at that stage where I'm counting the hours and minutes until I can take the next meds. Hopefully when this surgery is out of the way I can return to this stage and even beyond it to steal myself for more 'therapy' - chemo, radio or otherwise. 

Imminent Surgery

It's been a while folks! Chemo 6 really knocked me for six and it's taken some coming round from. Not to mention a tonne of marking, half term holiday with the annual jaunt to Wales and another gazillion hospital visits.

When 6 rounds of chemotherapy have been completed there is a 4-6 week window in which they have to do the mastectomy for optimum results. And so commences chapter and verse as to what will happen next, so buckle up! 

I have managed (very unlike me!) where this cancer diagnosis is concerned, to step away from Mr Google for the most part. Usually when someone says 'don't do....'; like a rebellious school child it's the first thing I do! The oncologist telling me 'Whatever happens don't google Triple Negative Breast Cancer as there are so many horror stories' quite honestly scared me silly. I did eventually read up on the facts about it but on the advice of a fellow #cancerbuddy I stuck to the main sites (Good tip Mrs Thorpe ;-)

I read the details about the raft of side effects the different chemo drugs could cause. Nausea. Check. Vomiting. Check. Bone,muscle and joint pain. Check. Rigid, brittle and discoloured nails. Check. Neuropathy. Check. Bloating. Check. Reflux. Check. Hair loss. Check. No periods (probably an induced premature menopause) Check. Nasty taste in mouth. Check. Tinnitus. Check. Constipation. Check. Loss of taste. Check. Diarrhoea. Check. Sweats. Check. Breathlessness. Check. Dizziness. Check. Hearing loss. Check. Mouth ulcers. Check. Weight gain. Check. Hot flushes. Check. Brain fog. Check. Chemo cough. Check. Yes all of those side effects...and more.

And the third thing I read about; in fact researched quite extensively, were the different types of reconstruction that are available. 

Some of them involve the surgeons relocating muscle to recreate the breast that has been removed. All the surgeons do different types of reconstruction. The surgeon who I've had since the beginning uses the latissimus dorsi muscle to reconstruct http://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/lat-dorsi 

The head plastic surgeon at Leeds offers another procedure using stomach muscle to reconstruct called The TRAM Flap http://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/tram

I do want a tissue reconstruction if possible, but why would I want them to use muscle that I need elsewhere?? Back muscle I particularly need for using crutches or a wheelchair and for when I can return to swimming. 

They can also reconstruct using an implant, which I know many have successfully. I'm not keen though on setting myself up for more surgery in the future when needing to have it replaced. I have had sooooo many opertions now I am quite frankly sick of them.

The DIEP Flap surgery seemed a sensible route to go down. I have always been partial to carrying a little extra (sometimes a lot!) around the midrif so growing a new boob there seemed a no-brainer! 

One surgeon does the mastectomy and a specialist microsurgeon removes a flap of skin and tissue (including blood supply) from the abdomen and somehow reconstructs a breast. I will lose my nipple but they 'create' the new area where it will be located from the abdominal skin and will also reconstruct this at a later date using sewing techniques and tattooing. All quite amazing really and complicated and I won't lie; very very scary.

I won't subject you to photographs but below is a diagram of the area they remove and then what the finished result should appear like....in theory. 

You can read more about it here https://www.microsurgeon.org/diepbreastreconstruction

Despite this technique being carried out regularly since 1991 there aren't a huge number of oncoplastic breast microsurgeons who have the skills to do it. Unfortunately for me the chap who has been doing so at Leeds Teaching Hospitals is leaving. So I would be faced with accepting the Dorsi or TRAM flap options. So unfortunately I have become one of these patients who faces a postcode lottery of treatment options.  As I'm a suitable candidate for it, if I lived in Hull or York, I would be offered it as a matter of course. 

I'm not resentful of this, although I felt backed into a corner, being forced to accept that if I wanted an abdominal tissue reconstruction of any kind, even the TRAM flap I would need to undergo 3 lots of surgery (mastectomy, reconstruction and the other side done to match). The guilt you're left with, rather than just concentrating on getting rid of the cancer, that you also want a reconstruction; a 'cosmetic' procedure, is huge. But come on I've already lost about 1/4 of my body due a cancer misdiagnosis, why wouldn't I want it? As I am likely to need radiotherapy after the surgery the powers that be at Leeds, quote 'flatly refuse' to do abdominal reconstructions before radiotherapy. I was left with no choice but to look elsewhere. I do feel I should have been presented with these choices as opposed to me doing all the research, especially given the tight time frame. 

To be honest I felt about as low as I could at this point. I could see no end to this nightmare. The treatment stretching before me, well into 2018. Whilst trying to recover from my 6th chemo and receiving the news that I would need to reapply for the lecturing role for September AND now this. So apologies if you were one of the people who asked me how I was or said 'Hi are you ok?' Or 'Hi, you alright?' in the playground at school, the supermarket or the corridor at work and I couldn't even bring myself to answer.

Synchronicity had me in touch with the friend of 3 people I already knew. Carolyn is also being treated for breast cancer but in York. We were in regular contact and it just so happened she is also opting for the DIEP flap surgery. Thankfully she saw a surgeon in Hull who, as eluded to already, was happy to reconstruct at the time of mastectomy i.e. without removing any muscle. This fab lady gave me a head start I needed of knowing who to see in Yorkshire. I could have requested to be referred on the NHS but by this time I was 2 weeks into the 'magic window', so the reality is I would have had to have the mastectomy at Leeds and gone to Hull afterwards. 

Thankfully this time being back in touch with Mr Google I found Mr Akali also consults privately at Hull Spire. Thanks to my lovely Dad I've always had medical insurance since he worked at Unilever all those years ago (in fact I'm still under their group number!!) AXA PPP gave me the go ahead to see him and off we went. 

He said I was a candidate for DIEP Flap reconstruction at the time of mastectomy and said if I wanted to go down this route he could do it on June 15th. He explained to us that more recent large scale studies (which of course with access to zillions of journals at work I've been able to verify - shout if you want any links to read) have only showed minor issues, if any, with having radiotherapy and a number of his patients have had it. This was later confirmed at Leeds when I questioned it. Sadly it seems this 'current thinking' has not been taken on board yet here if women want abdominal reconstructions at the time of mastectomy. 

After an agonising wait my insurance thankfully authorised the surgery plus the follow up surgery to the right side (in 3-6 months time) plus nipple reconstruction and tattooing etc

I can't express my relief, which has meant I was able to relocate my mojo and find the motivation to get up in the mornings again. I feel like a different person. I now can see a possible end to this treatment by the turn of the year (maybe with some more minor procedures to be completed in 2018).

I can't say I'll be skipping off to Hull on Thursday morning; who would, faced with 8 hours of surgery, a couple of days in HDU and 6-8 weeks recovery BUT I feel I'm on the right path for me to get rid of this cancer and move forward. I am quite honestly petrified and dreading it but to coin one of my most used phrases recently 'needs must'. It means 1 major surgery not 2 and hopefully ticking off another step on this hideous journey. 

The next step in early July will be hearing what further active treatment I need. Possibly another 2 cycles of chemo and as mentioned, radiotherapy. We will see what the pathologist has to say following surgery and the outcome of the subsequent MDT (multi disciplinary team) meeting at Leeds but we will cross those bridges when we get to them. 

Understandably my faith in pathologists is not great; as 2 were previously responsible for my cancer misdiagnosis in 1992 but I will find myself at their mercy once again. Thankfully as a result of public enquiries, such as the one I was caught up in and much better practice the MDT including numerous different professionals caring for us then discuss these results and make decisions as to the next step in our treatment regimes.

I feel like I'm on a rollercoaster (I've never liked them) and can't get off. I am not brave or inspirational as I'm regularly told, I have no choice but to continue on this journey and am merely keeping on keeping on. Thanks to all those who are on it with me and those who've climbed aboard since it started.

Latest

It's been a while since my last blogpost, for numerous reasons really. I'm afraid this one will probably just be a bunch of ramblings so I apologise now!

I had to have a PICC line fitted as I had the problems with the extravasation during Round 4. As I wasn't able to have sedation I got myself in a real state about it. I guess physical and emotional strength and also resilience were waning, not surprisingly.

http://www.macmillan.org.uk/information-and-support/treating/chemotherapy/being-treated-with-chemotherapy/picc-lines.html#46802

Which makes the calls to remain positive and strong to be honest start to put on too much pressure. I read this blog post from a BBC journalist who is also being treated for breast cancer and hits the nail right on the head, read it here http://www.bigclittleme.co.uk/blog/negative-positivity I realise often people don't know what to say and anything that is said, in the words of my fab friend Sarah, is said ''from a place of love''. These days though we use the 'Hi how are you?' Or 'You ok?' not really for actually enquiring but as a greeting. In reality people would feel uncomfortable if you started spouting all the side effects and how crap life feels at times. I have got to the stage though where I don't feel like saying 'I'm fine' or 'OK' when it's the last thing I feel. I'm scared of the surgery. Looking in the mirror after they've cut me up again and removed another body part. I'm worried about the pain and how hard it'll be to get around afterwards, when trying to use the crutches too. I'm wondering if I'll get the all clear or if the cancer will come back. Whether I'll get to see my children grow up and my beautiful girl in a wedding dress. This is the reality of cancer and when you find yourself staring your own mortality in the face....again.

I try to remain 'cup half full' as opposed to empty, for example when in the centre of Leeds at 5pm waiting for Jack to have his counselling, having to sit on a bench as the cafes are closing and I can't face the walk to a posh shopping centre, then it takes an hour to drive home. I TRY to focus on the positive that at least he's getting the support he needs. But it's HARD, I just want to be at home....and not have cancer. For my 6 year year old not to have to cling to me and say 'I don't want you to die'. My 15 year old not to have to stay at school because she can't bear to see me so ill or sob when I need to ask her to help me cut a dressing off. For our lives not to be dominated time and time again by my health and the shit sandwich we seem to be dealt. But this is the reality for now. I hope it's temporary and we can be happy and care free again at times and for the children to have nothing more to worry about than where their fidget spinners are or whether they're invited to the next party. I don't mean that I expect life to 'get better' I truly believe this is LIFE. Everyone has their fair share of challenges, some more than others in reality but we have to face them and get on with it. No one else will do it for us. We won't always get it right but as I've told Jack this week facing his SATS; we can only do our best.

I'm spinning so many plates and some days I want to just pull the duvet over my head and stay there. But I can't; children have to be roused and given breakfast and be deposited at school, usually after some meltdown or argument between them. Students need to be tutored or observed and assessments marked, lit reviews written and emails answered. My job does make me feel better, valued and of course distracted. I can be Vicki the teacher, lecturer, colleague and friend NOT Vicki the cancer patient.

Round 5 hit me hard. The side effects kicked in before I even left the hospital. And to cut a very long story short I could hardly get out of bed from when I came home that evening or for the following 5 days. I managed a few stints on the 'not very comfy couch' so opted for my pit instead! Nicola injected me there every day and I had visitors, some meals, lots of ice lollies and ice cream there too! And yes for once I RESTED.

I am finding great solace in my friends, new and old, who are also being treated for cancer or have been. Also friends whose children are being or have been treated for this dreadful disease; with brutal drugs that burn your skin, harden your veins, give you mouth ulcers and tear skin off the roof of your mouth and hands, make the hair on your head and the rest of your body fall out, make your hands, feet, face and lips numb or tingle, make you feel sick and be sick, require huge amount of drugs that have side effects themselves - sleeplessness, hunger, thirst, constipation or diarrhoea, give you bruises and blisters, muscle aches and bone and joint pains so bad that heat pads and even oromorph doesn't touch them. Hideous reflux, sore watery eyes, sweats, breathlessness and weight gain. Your kidneys lose magnesium and your iron, calcium, white cells, red cells, ALL cells, haemoglobin and vitamin D become low. These folk therefore just 'get it' but it breaks my heart seeing and hearing about it ravaging them and their children...... We can talk, mostly via text, whatsapp and messenger and empathise but also help and support each other.

The kind messages, cards, emails, hugs in the playground, meals, flowers, gifts, trips for afternoon teas, offers of help, food parcels, ironing, childcare, lifts, company and cups of tea help MASSIVELY and are enormously appreciated. We quite literally couldn't get through this without you all. Thank you from the bottom of our hearts.

So as I face Round 6 tomorrow I don't expect the side effects to be any easier or recovery any quicker, to be honest maybe harder. I will have my mastectomy 4 weeks on Friday then wait another couple of weeks to find out of I need more chemo and radiotherapy. The reconstruction will come later. This is going to continue to a be a very LONG journey so I need to take one step at a time and get tomorrow ticked off first.

CLICK ON THE ARROW BELOW TO WATCH THE VIDEO

Chemo Round 4

As you will have noticed I haven't posted for a few days. 

It's been a tough week. A REALLY tough week. I think that being in hospital for a lot of the time between Rounds 3 and 4 of chemotherapy has had a lot to do with it. Always before I've had the chance to regroup, to recharge my batteries and bolster my thoughts ready to face the next onslaught. I literally had 'day release' this time around. What a lovely day it was! Sunshine, Mothers Day, fresh air and dinner out. Wonderful but not enough. 

I was so relieved that they didn't delay the chemo and I could proceed on schedule. Tuesday morning, chemo day, dawned and it was so hard to remain positive and cheerful. I had to drive the kids to school and be jolly and encouraging and drop Hope off knowing I wouldn't see her until Friday. So yes, when the brave face mask slipped I sobbed, and sobbed hard. I dreaded returning for the chemo, knowing yet again how ill it makes me and the pain causes. The rational mind knows it's 'one step closer to better health', 'one more under my belt' and all the other good reasons to go and be subjected to this medieval, brutal torture but the inner child wants to run in the other direction, fast.

I also knew I had to have the chemo through a cannula in my hand as I had my chest line removed due to infection. Thankfully as you can see that's healing well.

Despite the years that have passed my veins do not like needles. After just 10 days of not having the Hickman my arms are like pin cushions, bruised and swollen. I am thankful for having the line to get me through the first 3 cycles and to have avoided these problems thus far. 

You are advised to take paracetamol and ibuprofen before wearing the Cold Cap which has always helped. This time however I already had a banging headache and the meds didn't help. 

I decided it was a battle I didn't need to face on Tuesday, I had too many others and they were making my strength wane. Thankfully I had my long time chemo companion Ainsley (aka Legend) to bounce this idea off. Good decision.

Unfortunately some of the chemotherapy drugs leaked out into the tissue around the cannula in my hand https://en.m.wikipedia.org/wiki/Extravasation_(intravenous) The way to treat this leak is to inject around the whole area with the antidote dexrazoxane. As you may imagine this needs to be done quickly with no local anaesthetic and is incredibly painful especially as there is no flesh on the back of your hand.

I can usually grit my teeth and bite my lip and not cry out. Not on this occasion. I was barely aware of being in a bay with 5 others receiving chemo as it just felt like the pain from one injection to the next rolled together. The nurses couldn't have been kinder or more apologetic. They told me it's the worst thing they have to do to patients and they feel like they are literally torturing people. Ainsley tells me my lovely, lovely friend and chemo buddy Sally was shouting encouragement through the curtain. She experienced this once too when she had chemo 12 years ago for osteosarcoma in her leg. An experience no one EVER forgets or wants to repeat.

Hindsight is a great thing but I am glad I didn't use the cold cap as I would have had to go through this experience with it on. Even if they switched it off immediately it takes 20-30 minutes for the ice to melt so you can remove it.

My hand is much better and healing but I've been told it'll be sore for a while. Due to the quick actions of the medical staff I won't have to severe tissue damage, face plastic surgery or worst case scenario amputation. How can your veins and blood stream cope with this poison when your tissue would be so damaged?? Mind blowing.

I have also been told they can't attempt the chemo in my hand again. Next week we'll discuss the insertion on a PICC line http://www.macmillan.org.uk/information-and-support/treating/chemotherapy/being-treated-with-chemotherapy/picc-lines.html 

This will hopefully get me through the last two rounds without too much drama! I will await to hear if they need to check if the superbug http://www.everydayhealth.com/klebsiella-pneumoniae/guide/ I contracted when I had the Hickman Line has been cleared by the antibiotics. 

I have suffered quickly this time from the usual chemo side effects - sore mouth, with ulcers, skin peeling off and altered taste. Bad reflux and nausea. One of the side effects of one of the chemotherapy drug I have docetaxel http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/docetaxel is bone and joint pain. The use of GCSF injections for 5 days post chemo to try and prevent the blood counts dropping, avoid neutropenia  and help the body still fight infection is routine after some types of chemo including mine http://www.macmillan.org.uk/information-and-support/treating/supportive-and-other-treatments/supportive-therapies/g-csf.html But it can also cause bone pain in the areas where there is a larger surface area e.g. The long bones, pelvis, back. So as the medics describe it 'a double whammy'. 

Days 4 and 5 towards the end of the injections are always the worst for this but I try and remember that they are doing their job and manage to sustain my counts in between rounds. The pain breaks through the usual paracetamol, codeine and ibuprofen that I take regularly and preventatively. Morphine is usually the only effective way to tackle it. This time I have been given it orally to have at home. Fingers crossed it will keep me out of hospital this round! 

#TeamVicki have been on hand again in abundance with everything from meals to flowers and more, our gratitude is beyond measure. 

I am now on the countdown to Day 8 which is usually the turning point for me. I sincerely hope for some 'good days' in between rounds this time, especially with Easter coming up and some nice activities planned. I look forward to being back at work and immersing myself in module reviews, tutorials and placements visits. One of latest gifts will be worn with pride ha!

My hair will now all come out but that is the least of my worries right now and I have 'Shine Caramel Glow' waiting in the wings and a zillion hats! Retaining my anonymity early in treatment was important but everyone now knows including my students and I will steel myself to face the stares and questions from strangers.

CLICK ON THE VIDEO TO WATCH

The Reality of being treated for Breast Cancer - Part 13

Well I managed to get all of 36 hours away from my 'second home' as I call it http://www.leedsth.nhs.uk/a-z-of-services/leeds-cancer-centre/what-we-do/

It's been a TOUGH third round with very little respite from symptoms and complications. Unbelievably though I have somehow managed to get to 3 weeks post chemo and the day of Round 4 and not to have to delay it despite being on 2 lots of antibiotics sadly caused by infection in and around my Hickman Line which is seen in immuno compromised patients http://www.everydayhealth.com/klebsiella-pneumoniae/guide/  They are surprised I am not more 'unwell' (so I am reading that) but I feel it's a positive sign that my neutrophils ate up enough to go ahead with chemo and my infection markers are down enough. I am not neutropenic. Although I did I became very unwell one night last week in hospital, unable to get my breath. It really was the first time I was frightened. I was lying there thinking 'I am beating this cancer and now I'm going to die from this' truly petrifying, looking at the panic and concern on my nurse's face didn't help. They haven't ruled out a pulmonary embolism despite the chest CT scan but hopefully are being overcautious injecting me with http://www.medicinenet.com/tinzaparin-injection/article.htm So in theory I am good to go.

I spent time watching a movie with my family on Saturday night when I'd escaped from hospital. A lovely Sunday watching the little boys play rugby and nearly 2 hours in the sandpit in the sunshine, ran errands and the day was topped off by a Mother's Day meal out in a lovely local pub.

I actually enjoyed doing the school run yesterday and especially seeing my 'Mum Friends'. Then it was back to reality and the hospital, clinic, blood tests etc But I got to do almost a full working day afterwards; tutorials with students, emailing, marking and just being away from the hospital was hugely welcomed.

Now waking, after about 3 hours sleep or should I say tossing and turning and sweating, thanks to the diet of steroids yesterday. Brings the feeling that has been deeply buried for nearly 25 years, of having to drag myself back to the hospital to be made very unwell again and be barely able to function. The pre-chemo nausea has set in. Boy, this is hard and unwelcome.

The Reality of being treated for Breast Cancer - Part 12

I have spent the last week in St James' Hospital. At The Yorkshire Cancer Centre which is actually a world renowned treatment centre where people from all over the country and the world are treated for many different types of cancer. I am just lucky I'm local and have access to treatment! 

Finally I am home, after 20+ doses of IV antibiotics, many more IV flushes, umpteen doses of oral antibiotics, 1 trip to the operating theatre, 1 Hickman line removal, 1 ECG, 1 chest X-ray, 1 CT scan, 4 different cannulas, many blood tests,  blood pressure, temperature and sats checks, swabs, blood cultures, codeine, paracetam'ol, oramorph,  several Gluten Free meals (thankfully!), dozens of cups of green tea, lots of gf supplies along with their visitors and not surprisingly very little sleep.

The staff looking after me were lovely and kind and of course overworked. Sometimes I had to wait a long time for drugs or someone to stop the IV pump from bleeping or didn't get a cup of tea. Although unlike some people who have secondary cancers and are having to raise huge amounts of money to go for available treatments abroad, as the NHS can't offer them anything else, I am getting my treatment and tests and am thankful for this.

I am desperately hoping this week's chemo isn't delayed but we will have to see. I go to clinic on Monday and I'm sur I can convince them! I will have to have it through a cannula in my hand now the line has been removed. My infection markers are going down thankfully and counts are good so here's hoping!!!

Thanks once again for all the ongoing support, cards, gifts, messages, visits, food and childcare it is VERY much appreciated as always :-)

The Reality of being treated for Breast Cancer - Part 11 - Lost Track of the Days

Well I know how many days I have been stuck in hospital.....4 so far :-/  I have lost track of the number of days I am post chemo as I'm now on the countdown to the next round....6 days. It comes around too quickly. This is the reality of cancer.

I am getting well and truly fed up now. This is my 'good' week, when I feel much better and well enough to do 'normal' things. Spend time with my family and friends, Mum taxiing, shopping, cooking, working but I'm feel it's been wasted battling infections. This is the reality of cancer.

So yes this IS the reality of having cancer......exactly what I'm writing about, but it doesn't make it any easier to swallow. Usually this week I can almost pretend life is moving forward as if this nightmare wasn't happening. If you'd told me that I'd be spending this afternoon discussing genetic testing, how much hair I'm losing, mouth ulcers and which type of breast reconstruction was preferable, with my dear friend Sally I would have told you that you were nuts. This is the reality of cancer.

No matter how positive you remain you are still staring your own mortality straight in the face. Relying on the statistics that 78% of women get through this barbaric treatment and live their lives as they choose to again. You can't help but have that niggling doubt and embrace every opportunity...to give your child that party they REALLY want even though it's expensive, buy them that game they desperately covet or take that trip you've always dreamed of, read your child just one more chapter of the book, watch that show you've always planned to see; you want to make sure you create those lifelong memories...just in case. This is the reality of cancer.

Yes I am lucky to have several friends and family who have beaten this dreadful disease and it's never come back. Plus everyone I meet has a positive story about a friend, family member or neighbour who has too and it does help to hear these BUT it's hard to push those out of your mind who haven't. Such as the wife of a friend of over twenty years who died of breast cancer 2 years ago and having been in this environment before, all those you meet along the way who don't make it. This is the reality of cancer.

I am protecting myself more this time around. I don't catch the eye of the person next to me in clinic or pre-assessment, I am thankful for my own room, I'm avoiding The Robert Ogden Centre and The Haven. I don't want to hear everyone's awful heartache that I meet whilst I'm on this journey. Yes bone tumours are much rarer and have nowhere near as good survival rates as breast cancer but I lost 8 out of 10 of the friends I made and kept in touch with. I can't deal with that again. This is the reality of cancer.

I am fighting a losing battle with my Hickman line. It's sore and stops me sleeping, I have a bug around it and in it and now another one in my blood. I will let it win on this occasion. It has served me well for half my chemotherapy treatment and taken away the stress and pain of having needles.

I do not want to waste more time stuck in here; battling to get fed properly, I'll have the next chemo in my hand and then when all these infections have cleared I can have a PICC line. I hope chemo won't be delayed, tomorrow I will see the Professor of Oncology and the Registrar and I will convince her it's the best course of action. How soon I will get a theatre slot and whether they will release me yet after the removal with oral antibiotics are all questions for tomorrow. I will just have to be patient.

The Reality of being treated for Breast Cancer - Part 10 - Day 12 Post Chemo

Well after battling a problem with my Hickman line site for as few days now, after one emergency visit to St James' last weekend and a week on oral antibiotics it was worse than ever. I rang the hospital and asked for the oncology bleep holder and they advised me to come in to Ward 95. Which is where I'm typing this from now on Day 13 post chemo! Yes they captured me and I had to stay in!

I'm not too fed up as I know it's what's required and I am in the best place to get this nailed once and for all. I am lucky to have my own room therefore some privacy for me staggering to the loo on the crutches, drip stand in tow! I am hoping to escape later this evening after 24 hours of IV antibiotics as they seem to be working and my chest is far sore woo hoo!

The Reality of being treated for Breast Cancer - Part 9 - Days 9-11 Post Chemo

As seems to be the pattern I have felt better and better as the week has gone on. Ha, even the students I saw on Friday noticed the improvement since Wednesday (subtly conveyed of course ;-) I've enjoyed being back at work and have been very busy, so thankfully no time to dwell on things.

The main problem I've been battling against is where my line exits is sore and not only that, for about 3 days post flush it's been sore under the skin too, as if bruised. I have been on antibiotics all week but this doesn't seem to have shifted the problem - maybe not the right drugs....

It is a worry as problems with it can delay chemo but we'll cross those bridges if they arise. I keep thinking each day I need to go back and get it checked, as it's oozing again tonight, tomorrow may be that day.

Another frustrating aspect is that I feel 'well', then as soon as I start to do anything, whether teaching or walking around the shops I have the most awful head and neck sweats, where I'm literally dripping onto my collar :-/ and get really breathless. I was told by the oncologist that these are chemo side effects. The state of me when I was teaching this afternoon, goodness knows what people would have thought!!

As you start to feel better and more like yourself it's hard as you know you're shortly going to have to go back and be made so poorly again. My rational mind knows 'needs must' and that it all means it's one step closer to this brutal treatment being over and preparing for the Mastectomy. More appointments scheduled too over the weeks to come with my Oncologist, Breast Care Nurse, Breast Surgeon. Scans and weekly line flushes, blood tests and counselling for Jack.

So the world keeps turning and as has also been the pattern, our friends and family continue to be so hugely supportive, with everything from meals to childcare, gifts, cards and flowers. Yet again I really cannot express how this is all helping us to continue with 'life as we know it'. The children are finding it hard, so any semblance of their normality is a bonus. Jack started counselling this week as we really don't know how to help him sometimes to deal with his feelings and worries. I'm hoping and praying it helps for him to talk to someone who is not emotionally connected. Hope took the brave decision to stay at school whilst I was in for chemo and for the following few days. A mature attitude from a 15 year old, who could recognise what she could and could not deal with. Thankfully school have been helpful and accommodating beyond measure and I know she will be well looked after and thankfully has a great connection with staff. It is heartbreaking for me though..... Cancer is never easy for anyone and sometimes (both during this experience and the last) I think it's almost harder to watch someone you love go through this and be unable to do anything to take it away.

I will keep on keeping on.

The Reality of being treated for Breast Cancer - Part 8 - Day 7 post Chemo

I was too tired to post yesterday, after another busy one!

I need my line flushing weekly, ordinarily you wait in on that day for the District Nurses to come but that would of course mean I'm unable to plan anything else for that day. This way I get to go into work before and after. And to be honest my first (and last) experience of waiting for the District Nurse wasn't very positive. She rang me and told me they were too busy and wouldn't be able to come.

Although as you will see in the clip trying to actually park at the hospital is easier said than done (N.B. I wasn't holding the phone while filming it was in the cradle!).

Since the line was flushed (saline gets syringed through to check it's still 'open' and they check they can still draw blood from it) it's been really sore (tender and uncomfortable even to the touch) I'm just helping it settles tomorrow but we shall see.

So Day 7 I was shattered and Day 8 I'm hoping is the turning point, as it has been the previous 2 cycles  and from Day 9 I start to feel myself again. Both boys hav been off school ill which has been tricky. Obviously looking after them, whilst trying not to catch anything but also not wanting to have any more time off work.

I also took Jack for his first counselling session. After not wanting to go in it seemed to go well, as he was quite cheerful when he came out and I took him for a special tea together.